Island of Children

Rugutė

Our little girl , or our little monkey, as we used to call her then, came into our lives in the fall of 2000. She really looked like a little monkey as her body was covered with tiny black hair. She was staring at us with big eyes. During my whole pregnancy, I dreamed about a little girl. I fantasized how I would braid her hair, how I would nurture and educate her, and how we would be the best of friends. People around me were predicting that I would have a boy. It did not make me sad but… When after a long and a hard delivery, I lifted my head to see, the warmth and happiness filled my heart – I had a little girl. That was a unique, inimitable moment. However, at the same time the anxiety that something might go wrong followed the feeling of joy and happiness. I tried to banish that feeling out of my head. I just wanted to enjoy life. On November 6, my daughter and I started to breathe at the same pace. We started to feel each other very strongly. An unpredictable, mysterious and cute personality disrupted our steady quiet life. We started to live according to her rhythm and pace. It took us a long time to find the right name for her. None of them seemed appropriate. Finally, we decided to name her Rugilė.

Our daughter nursed very well, so it was no wonder that she was getting stronger and stronger every day. I felt blessed when she would fall sound asleep lying on my belly. Rugilė was very curious child. Soon she got bored of being just a passive observer. Her first words were: “What’s that?” and she archly pronounced tėtė (daddy). I gently envied these first words. Probably feeling it, my husband taught her to pronounce word mama (mom) very soon. Rugilė fascinated us with her curiosity. We decided to let her discover things that we previously considered as unsafe. She did this with the great enthusiasm. Rugilė was hardly ever sick. When she turned one year old, I entrusted my sister-in-law Renata to take care of her while I was at work. Naturally, Renata became one more very close person to Rugilė. The few times when Rugilė got a very high fever, I began to get anxious. I could not believe that it was pharyngitis as the doctor tried to convince me. Our daughter began to get restless during her sleep. The doctors considered it to be normal.

The day of a real diagnosis was unmercifully coming closer. Rugilė became very badly constipated. Everyone told us that we should just adjust her diet and everything would be back to normal again. In the summer, we went to visit her grandmother. It seemed that it would be easier to promote a healthy diet there with all the fresh vegetables and fruits in reach. Despite all our efforts, the constipation only got worse. Our friends suggested that we should go to Palanga as the sea might help everything to get back to normal. These were the last of our happiest days. The constipation was getting worse and worse. When we came back, we went to see the doctors again. We were given the same answer as before – adjust her diet. When I asked if anatomically everything was all right, I was told, “of course, you saw that I was looking at her rectum”. Sadly but already then the tumor had strangulated her rectum. Two days later when Rugilė was crawling across the bed, suddenly I noticed a lump in the area of her buttock. We impatiently waited for Monday morning. This time we did not bring her to the walk-in-clinic. We went straight to the hospital. Pointing at the lump, I asked what it was. On that day, August 26 th 2002, we started the hard fight with death. Since that day, we have continued to fight for each single day of Rugilė’s life, each day with us, and each day with the least pain for her.

When I think about each single day in detail, my heart starts bleeding again. It is hardly possible to believe that at the Children’s Hospital of Vilnius University wounds were bound up without using anesthetics. The festers were simply reopened with fingers and cleaned. How is it possible “to forget” that these children feel a terrible pain? We tried our best to diminish Rugilė’s physical as well as spiritual pain. First, we won the battle to be allowed to be with Rugilė at the dressing-station. She was very scared to be left alone. I tried to learn how to bind our daughter’s wounds while comforting her. After the surgeries, when we came back to the Oncohematological department, I no longer allowed the nurses to bind up Rugilė’s wounds anymore..
I bought lots of necessary dressing and did that job myself very patiently and gently. Rugilė was happy that it did not hurt as much and I was pleased that she did not have nightmares anymore. It was very painful to hear Rugilė’s complaint that nurses at the Intensive Care Unit (ICU) did not like her. She had four surgeries in total. She spent only four days at the Intensive Care Unit but always complained about the same thing.

Hearing Rugilė’s words, we always tried to get her back as soon as possible from the ICU. I wanted to be with her all the time in order to settle her with special nursing, gentleness and comfort. I wanted my daughter to feel safe. What was happening at the ICU where our children should get a very special attention and gentleness, benignity? After surgeries, we were fighting not only in the Surgical Department but also in the Oncohematological too. Moreover, it was supposed to be our second home. It was very sad to hear the suggestion that the child who went through a terribly painful binding procedure should get a spanking in order to whip out all crankiness because she was scared and cried during visitation. How should a mother feel when in response to her suggestions as to what is best for her child, the staff not objects. We were not affraid to talk, to ask, even to require. But of cource we required things only when they were argued. However, our little and bright sunshine would not let us get sad.

Our daughter was very pretty. She swept us along with her intelligence and charm. When she was 2.5 years old, she could count up to ten and she knew all the numbers up to twenty. She also recognized all the letters. Before she turned 3 years old, she asked us to buy her the beginners reading book. She was never able to pass by a bookstore. Naturally, she never left one empty handed either. Daddy was spending a lot of time with her reading books and teaching her how to use the computer. It is so sweet to remember how proud she was of being able to start her favorite computer program or game. She liked to type letters, to draw and to write messages to her daddy. In return, her daddy spoiled her with cartoons at the hospital room to help her forget her pain and sadness at least for a little while.Her best friends became cartoon characters Crocodile Gena, Penguins Lolo and Pepe, Fish Nemo. Nevertheless, the characters she loved the most were the Twins. She could watch them all day long. She was drawing, singing, dancing along with them.

If I showed you her most favorite toys, it would look as if I were talking about a boy. She was the type of girl that was not interested in playing with dolls unless she could take them apart. She did not like stuffed animals either. The only exception was her stuffed Twins and Kulverstukas (the tumbler). She also liked to construct with Lego, to draw, and to put puzzles together. She got sad when after the surgeries she could not ride a bicycle and scooter anymore. My brother was often joking that Rugilė should be consulted first before any toys are brought to her. Otherwise, they most probably would not be the right thing anyway. But most of all she liked trains. First, she saw them in Palanga before we got to know about her illness. We always remember after Rugilė’s first surgery, when she was still very weak and stayed in the ICU. I mentioned to her that Vygutis brought a wonderful monkey for her, she asked about the train. Of course, the next day the train was already waiting for her in her hospital room too. Her first toy train was the present of Vigintas. Every evening all year round she would talk about her dream once again to go to Palanga and to see live penguins, her friends Lolo and Pepe... Now we are glad that despite our doubts and worries that Rugilė might get too tired, catch cold and get sick, we decided to fulfill her dream.

That was the last day we saw her excited, full of joy and happiness . A month later the fourth surgery was performed. After that, she started to feel pain in her legs and her eyes stopped gleaming. When Rugutė’s third birthday was approaching, I asked her if she could whisper her secret dream in to my ear. I was very sad to hear her answer that she did not want anything as she had everything except for a good health. Her biggest dream was to be healthy again. I do not know if I ever felt as helpless as I felt then. To tell the truth, later when wrote the letter to Santa Claus we asked only for the good health again. Thinking about Christmas time brings some warm memories in to my heart.

Every time when we were rushing Rugilė to the hospital, we tried to guess if the Santa Claus would come today. Our daughter was very proud to know some poems by heart. We impatiently waited for the concert of children’s group Telebimbam as well as for the play of children’s theatre at the hospital. Almost every evening we went to see a big Christmas tree at the Cathedral Square. On the weekends, Rugilė was extremely happy to know that my brother Vigintas, his wife Eglė and their daughter Gabutė would come for a visit. She was very joyful while playing with Gabutė. I was always asking her to take care of herself, to slow down or to rest. She would just look at me smiling and I would not say a word anymore. I already knew that by the evening I would get more tired than she would. She still wanted to talk before falling asleep and we did that every night. While I was taking a shower, Rugutė would discuss things with her daddy. After saying her greeting ritual and wishing good night to him, she still for a long time would share her memories and dreams with me. I dare to admit that often in the morning I would hear from her: “mommy, you fell asleep first again”! Rugilė was a very determined, strong-minded little girl.

I have already mentioned about her greeting ritual. Rugilė herself came up with the idea of it. She would change it a little bit every time but the beginning always stayed the same: “I will get healthy, I will get healthy, I will necessarily get healthy again”. Later we all carried signs of Scorpion as she had asked us. Our daughter thought that if there were more scorpions (on the neck of mommy and daddy), she would get stronger and the cancer might be defeated. Later she came up with idea that we should light the candle and inhale the sweet smell of burning wax. Rugilė finished her ritual by praying God to give her more strength and good health. Rugutė believed if she asked God for something he would definitely give that to her. I am not a writer so it is very hard to convey our daughter’s charm through words. I hope that I was at least somewhat successful so that you can imagine what kind of person was Rugilė and what we felt for her.

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